Lyme Disease Support Group

This is not LD & Co related but I have to get it off my chest or I'll lose it, for sure!!!

I have had sever endocrine issues that have gone un-DX for the past 8 yrs. We were finally able to narrow it down to Hypopituitarism w/ secondary, central hypothyroidism.(I realize this is like a foreign language to most of you, sorry) So, we needed to figure out what hormone disorder was causing it.

When my LLMD saw the MRI, she knew right away what it was... MEN1.

Long story short: In order for a person to have MEN1, 1 or both of the parents have to have the disorder. It will manifest as Tubular Sclerosis in the 1st. decade of life. IE: My 8 yr. old son because of me.

Or it will manifest in the 3rd/4th decade in life as regular MEN1. IE: Myself.

Okay, here's the kicker, neither of my parents or any of my grandparents have ever had Tubular Sclerosis or MEN1. My LLMD said, "What do you mean there's no history & no one has ever had any issues? They've had too. How else would you have gotten it?"

Then she stop & said, "Oh, ummm.... nevermind". I asked her, "What?" & she said, "It doesn't matter who has it or doesn't have it, you do & we need to deal with it, Okay"

I got off the phone with her & I was racking my brain (hard to do with brain fog, I know) trying to figure out why my son & I have this but no one else in my entire family (both sides) didn't.

Maybe it was the brain fog, maybe I'm just a little slow or maybe I just didn't want to even think about it the time....

If my Mother does not have MEN1, then my Dad has to have it. Since my Dad doesn't have it, then guess what.... HE'S NOT MY REAL FATHER!!! Might explain my LLMD's dramatic pause & dropping the subject like she did. (ya think?)

I'm 42 yrs. old & I'm dealing with the fact that most likely my Father is not my Father... NOW?!? I guess it's like they say, "The truth always comes out in the end."

I have no idea how to even deal with this issue nor do I need the stress &/or drama. Do I just not say anything & let it go or do I confront my Mother?

For all I know, if my father really isn't my father, he might not even know. The man is 78 yrs. old. Do I really want to open this can of worms on him if he's just as clueless as I was?

I really need to get some sleep!!!

I found this info. on tubular sclerosis:

Is TSC inherited?

Although some individuals inherit the disorder from a parent with TSC, most cases occur as sporadic cases due to new, spontaneous mutations in TSC1 or TSC2. In this situation, neither parent has the disorder or the faulty gene(s). Instead, a faulty gene first occurs in the affected individual.

I'll post the link later.

Have to get ready for work.

Hugs,

Jackie

I know all about TS & how I person can get it or not get it. The Drs. couldn't figure it out because neither my DH or I had it & no family history on either side. So, we figured it was just spontaneous.

Shore - I hope I don't come off as not being grateful because I am. I know you're just trying to help but that base has already been covered. Thanks for caring enough to try & get me some info... even if I already knew it. You Rock!!!

...it's way past time you knew the truth!

I know people say us lymie's are overly-sensitive, blah, blah....but this is something that makes up who you are.

We live in a very different time than our parents did. These sorts of things used to be routinely swept under the rug. You tripped on the dirt-pile (as that happens with too much floor-sweeping). You are not wrong for feeling the way you do and you DESERVE an answer!

This doesn't merely affect you!!

A simple blood test for your parents (or proof of their blood-typing) would be a good place to start. No offense, but if it were me and I had been lied to my whole life, someone's 'word' on the matter wouldn't do a damn thing for me.

We are your family too, lovely soul, we are behind you in whatever it is that comes out now our arms offer a warm and supportive embrace

Ivy

Post edited by: PosionIvy, at: 10/26/2011 03:31 AM

I have this & I passed TS (among other things) to my son. My DD isn't effected but she could have what I have & not develop it until she's in her 30's-40's.

Either way, it is obviously "DOMINATE". So, I don't understand how not "ONE" person (parents, grandparents, siblings, aunts, uncles, cousins, nieces & nephews) & I have such a strong case of it.

Also, looking back now, there are things that were never said to me. Like why my parents got divorced right after I was born, only to remarry when I was 5. Why every one in my family is 5'10" or taller & I'm only 5'3". Everyone has brown eyes & I have green.

The fact that my older sister would always say, "You're not one of us, you're adopted". Why I always felt like my dad was ashamed of me & I was never good enough for him. Not to mention, I don't ever remember him saying "I Love You".

Honestly, if this is the case, it makes perfect sense to me now.

Ivy - You're always there for me.... Thank you!!! You're right, I know what I need to do. I just have to do it!!! Maybe I can just confront my Mother & leave my Father out of it, for now anyways.

It is what it is, there's nothing I can do about it right now.

I'm sorry for your situation...this is a hard one..

I think you are right in not including your father at this point, he may or may not know..and it would bring out hurt that would be hard to take back.

I know you and your mom have your differences, and she has a lot of your symptoms...are you sure she isn't the source of this? If she never gets tested for things, or is stubborn about that, maybe it was overlooked?

Raven, my heart goes out to you, this is no way to find out this kind of news..in all ways, this is not an easy thing to deal with.

If you decide to confront your mother, could you try and be as gentle as you can with her? This will bring back so many old wounds for her if this is indeed the case..

I know you are confused, angry, in shock, and a million other emotions right now..and I'm so sorry..

The only good thing right now is that you know exactly what is causing this for you..try and concentrate on that part, and take care of yourself first..things have a way of working themselves out when we take care of ourselves first and foremost.

You're in my thoughts and prayers Raven..I pray you are comforted and guided in the right direction to take.

God bless..

peace love and light-kim

Im pretty sure Im stating the obvious, but most with Lyme have severe endocrine issues... is it not possible that whats going on is just mimicking this?

LD & Co. does not cause this & yes, due to certain blood results, weight issues, my son having TS & a few unrelated issues LD & Co. issues (esp. facial muscle atrophy) it's pretty much a slam dunk on this one.

I guess it was never considered because there was no family history. If there had been, I would have know from the beginning what was going on.

This also my explain why I developed several forms of Mycoplasma & HHV-6. If not treated, over time the immune system weakens making it easier to develop systemic infection.

Like I said, IT IS WHAT IT IS & like my LLMD said, "Regardless of who I got it from, I have it & need to DEAL with it.

Honestly. I thought it was just me being paranoid but my DH also agrees with me on this one. Normally, he'd be like, "Dina, you don't know that! You're just over reacting. Wait until you get all the facts." Not this time. He also said, "You know she'll never admit it if you ask her" & "I guess this explains the way your Father has always treated you compared to your sister."

How are you doing? Are you angry, sad, slightly relieved? I read some of the link, but need to look further into this. What doctor best treats MEN1? How is your son?

Hang on to any hope right now, dear!

Ivy